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Hey ! i'm new

Hey guys, im megan and i'm new. I do not have lupus, so i'm not sure if im at the right place. My mom was diag. right after my 1st b-day, and was told she was not going to live to see me turn 2. I am now 18. She went into remission when i was in 4th grade, the bad this is tho she came out this past may, 3 days before graduation. She has been in and out of hospitials, is on many many meds and shot combo's. This is somthing i have had to live with my whole life, my mom is my bestfriend and my rock. Just latley, well in the past month or so, i think may be the first time i actually took it all in. Sure i have been in the hospitial rooms with her my whole life, but i don't think i emotionaly prepared myself. I hate living with the fact my mother could pretty muh die every day. It's 4am and i never sleep much anymore because all i do is worry. I know it's not good but i dont knwo what else i can do, at this time she has pnumonia* and was just realsed out of the hospitial about a wk ago. She is now out of town for work. It sucks so bad, i hate being angry with her, but i am just so afraid of loosing her. Recently (past month or so) i have shown symptoms, such as, the milar* rash on my face and arthritis in my fingers and hands. I don't know what to do. well sorry for rambeling on, if im in the wrong place just let me know k ....thx very much for leting me vent, i have been sitting here reading stories about other lupies and bawling my eyes out. :?
~megan~...ps, feel free to IM me anytime...megpie0015

Hi Megan;
First of all, you are welcome here and this site was set up specifically for people to be able to vent, ask questions or just connect. So, you are not in the wrong place :lol:
I am so sorry to hear about your mother. I went through what you are going through with my daughter! It was so hard to see her so sick and to know, every day, that I was losing her to this horribe disease and all of its symptoms which just wreaked havoc on her poor fragile body!!!
Like your mother, she tried very hard to lead a normal life (like going to work, going to college) and I found myself angry at her for doing too much and making her symptoms worse. It took a lot of therapy for me to understand that "She had to do it, for HER OWN SANITY, she had to do it!!"
We cannot tell those who are suffering how to live their lives. Their aches and pains and sickness is with them 24 hours a day and 7 days a week. That is all that they know from morning until night. They need to feel that they can do something, that they are still able to be productive - or else they will lose their minds.
You must support your mother. Please try to do that, it is so important right now! Do not be angry with her, do not lecture her. Be supportive, knowing that she is trying, the best way that she knows how, to be as normal as she can for as long as she can!"
Help her to do that by loving and supporting her like you always have!
My heart goes out to you because I know, all too well, the kind of fear that you are living in. It is a pervasive sadness!

Now, about your symptoms....It sounds as if you need to ask your doctor to start running some tests. Your current stress is not helpful to your physical well being at all! I would suggest that you look into a LUPUS support group in your area. Perhaps you can even attend with your mother. In the meantime, we are here for you any time that you want to talk! I will keep you and your mother in my prayers.
Hope to talk to you soon :P
Saysusie

Hey saysusie,
Thank you so much i have a question....late this afternoon i started getting blisters on my top and bottom lip, and the roof of my mouth. The are pretty painful and my lip is swollen. I have no idea if this has to do with anything but i was just wondering. I know my mom has sores in her mouth but i wasnt sure if it was from meds, or the disease it self. I should probaly go to a support group, i am not sure if i would want my mom to attend with me bc when she see's me so upset, it just stresses her out even more.

i do need to go to the dr. but i am soo afraid, because, god forbidi be positive i'm not sure what i would do with myself. I am soo happy to know that other people feel the same way i do and experience some of the same things....not glad but happy to know i'm not alone. I would not wish this disease on my worst enemy. I want to thank you so very much for your prayers....God Bless, my email is Megpie0015@hotmail.com feel free to e-mail me at anytime.
~ <3 Megs :cry: :cry:

red swolen lips

your lips sound like what i have. i don't mean to scare you, it could be nothing at all, but i have lupus (no organs involved we don't think) and my lips swell up and crack from the sun. my hands also swell up and turn into a redish rash. did you say that you knew that you had lupus or were a potential for lupus? are you a carrier? i'm sorry for your mother, my mother and i have always had it, since birth, not horridly, but still pretty bad. if you want to talk, i'm here! lel

no one is like me, no one has ever seen what i have, i have doctors who don't know what to do! i have special doctors who don't know what they're talking about!